Patients seeking help for long COVID are getting more options for treatment

While COVID may not be top of mind for people anymore, the pandemic isn't over. And for some who have had COVID, neither is their illness. Many patients with long COVID experience symptoms for weeks or months after their initial infection has passed.

Nationwide, 1 in 5 adults who’ve recovered from COVID still have symptoms, according to a recent report from the U.S. Centers for Disease Control.

Dr. Vidya Sundareshan has seen a lot of patients who are frustrated because they’ve struggled to find help managing the lingering effects of the illness.

“They have gone through a battery of tests. They have seen neurologists multiple times. They've had multiple imaging studies,” said Sundareshan, an infectious disease physician at the Post-COVID Recovery Clinic at Southern Illinois University's School of Medicine. “And a lot of times there are really no solutions for the symptoms that they may have, the fatigue that they're feeling. Some people have been experiencing this for over a year.”

The clinic, located in Springfield, Illinois, is one of at least 60 post-COVID clinics that have opened in the U.S. during the pandemic. It’s run by more than a dozen doctors in different specialties, along with a handful of fellows and a medical student.

The multi-specialty group works together to help patients “come up with solutions, because the problem sometimes they have is not just limited to one system,” Sundareshan said.

‘It’s very frustrating for patients’

The idea for the central Illinois clinic began during the first year of the pandemic, after Sundareshan and her colleagues heard reports of patients reporting lingering COVID symptoms.

“And we started to think about care of these patients, wanted to understand the magnitude of the problem,” she said. “And the data is actually still coming out, as to what the true magnitude is of people that have post-COVID symptoms and syndromes.”

The clinic has seen roughly 200 patients so far. Sundareshan said people come in with many different symptoms: loss of smell, loss of taste, continuing fatigue, shortness of breath, brain fog. The most common symptom she sees patients seek help for is dizziness.

Sundareshan said many patients come to the clinic feeling misunderstood, or like they’ve been told their illness is all in their head.

She said she used to tell patients that things would get better in a year, but that isn’t always the case.

“Most of the time we tell them that with post-COVID, it's up to a year or year and a half to start feeling better, and some people still don't feel well,” Sundareshan said. “It is very frustrating for patients that experience this and, you know, offering support in any way possible is what we can do in these clinics.”

An infusion of federal funding could help

So far, Congress has allocated $1.5 billion in research money to the National Institutes of Health for the purpose of studying long COVID.

Sundareshan said she hopes research into long COVID will be useful beyond the pandemic and will benefit people suffering from other post-viral or chronic illnesses as well, including conditions like myopathy and neuropathy.

Part of the challenge is that everyone is learning as they go, she said, and there’s no roadmap to help predict the future for people with long COVID.

“The good thing about this day and age is that a lot of the information gets shared readily. And we have access to good information that need not be from our area locally,” she said. “...And you're able to extrapolate and make some good judgment calls there and give information to our patients when we take care of them.”

Sundareshan said vaccinated people who contract COVID are still at risk for long COVID. However, the chances of developing it seem to be lower. She added that vaccines have also been used as treatment for long COVID, in some cases helping to ease symptoms.

There is currently a waiting list for the Springfield-based clinic, and Sundareshan said they are hoping to expand to meet the increase in demand. The clinic also offers telehealth services for patients who may not live near a post-COVID clinic.

This story comes from a reporting collaboration that includes WSIU and Side Effects Public Media — a public health news initiative based at WFYI. Follow Steph on Twitter: @stephgwhiteside.

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